For the longest time, I didn't want to admit that there was anything wrong with me. For even longer I hated, I mean HATED talking about it. Someone would sidle up to me in public, lean toward me, and talk out the side of their mouth like we were CIA spies or at least discussing something illicit. 'Psst hey buddy, the wind is out of the west and the birds are going home (subcontext: how are you feeling?)' Usually I would just grunt as raining a rant of swear words down on their head is considered socially unacceptable. Go fig. I guess this year has finally brought another layer of healing and I would like to share a little of my story in hopes that it might help someone else.
As some of you may know, I have fibro (as in fibromyalgia). I may have contracted it during my graduate studies and as a side result of toxoplasmosis from overexposure to the birds I was using in my research... but we'll never know. I do know that the four years it took me to recover was the hardest and loneliest time of my life. My husband and I were baffled, angry, and at sea.
Fibro is unique to each person and is usually coupled with another dis-ease, making it hard to diagnose - so they say. Mine was a definite grab bag mix that included advanced COPD, lethargy, depression, hot and cold flashes, flu symptoms, dizziness, severe GI distress (I mean... SUH-VERE), confusion, diminished appetite, rashes, tender skin, skewed menstrual cycles, (and as a result of medications) extreme weight gain, hair loss, and muscular tremors. Doctors weren't giving us answers and my professors thought I was shirking my work. Needless to say, I wasn't skipping exams because I was too busy partying. I lost my voice, and my struggle for each breath would fill the house.
I can laugh at it now, but there were nights when I was so tired and scared to sleep I would pace and cry, lemme tall ya - kinda dumb when you can't breathe in the first place. Breathing was a colossal act of will, and if I didn't bring everything I had to the process of survival, I knew that would be it.
You hear about these survival stories, where people recount heroic tales of their will to keep living - on a mountainside where their plane had crashed, or on a raft in the middle of an ocean after their ship had sank. Mine was fought on a couch, that was my humble, everyday raft, and those moments were... untranslatable to anyone who has not been there.
Flashforward seven years. I am completely off medication, I am training for my first 5k since I got sick. I work a full time (well over full time actually) physically demanding job. I am healthy and happy and driven again. There are so many things that I know now that could have made my road to recovery shorter and smoother. Here are a few of those hard won nuggets:
- Find a reason for your existence. I can hear ya now, 'Are you f#@%ing crazy? I can barely (insert blank) and I am supposed to go all metaphysical?!!' Short answer: yes. What else can you do but watch t.v. and think? This is the one part of fibro that I am thankful for. It allowed me time and space to completely change my life's course and find a path forward that makes sense. If you believe God made each of us for a purpose, great, here's where you get to discover that. If you don't believe in god, great, here's a chance for you to not waste your time here. Do it.
- Find something that you enjoy doing while stationary. I taught myself embroidery, knitting, and took up creative writing again. You might wish to blog or write letters, or start up a dog re-homing website. Whatevs. You need something to keep your mind active while your body is not. Sitting on your ass, doing nothing, is easy. But so much harder to come back from. Don't cut off your nose to spite your face (my mom's saying) and you aren't hurting anyone but yourself by being obstinate and depressed (my saying).
- Find something you enjoy doing physically. Could be walking your dog, gardening, using an elliptical machine. It needs to be something that you can do long or short, that can end abruptly as needed and that you love to do. I decided to go work for a small landscaping company. Bless her, I wasn't much help in the beginning - I couldn't even lift a bag of mulch, had to rest all the time, and never got all the crabgrass roots out. However, it built my strength up, got me outside, and kept me engaged. You must do this! It seems like 'normal people' can just do whatever, whenever with no planning - good for them. You are smart enough to figure this out and understand your energy patterns - promise.
- Lastly, try different therapies. You don't know if they will help until you have tried. Keep a journal of everything you do/don't do and learn about yourself. For me, I now know what I have to do to keep myself in working order - no excuses for when I slip up. Its like a teenager with diabetes, doesn't matter how they got it or who was responsible. Doesn't matter that it's not fair. When you skirt by what you 'should' be doing, that's a choice, and you will end up paying for it. Move on. Choose to move on. Massage, hydrotherapies, energy work, reflexology are modalities that I use regularly. When I travel I research the area and see if there is something else that I can hit up. (Hint hint, check with your CPA, some of this might be tax deductible as a health maintenance cost.)
Was asked about best types of massage for fibro: this depends on how you react. Personally I find hot stone, bamboo and deep tissue the best for me. Sometimes it is incredibly painful during, but after I feel so much better. Some clients can't tolerate anything other than Swedish and wouldn't go without that style... Be clear and communicate your needs, most LMTs just want to be able to help - so don't be afraid to change things up mid-session if it isn't working.
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